I know that MS is a hard disease to diagnos, I had the lumbar puncture last year and that is normal but I know that doesn't mean that you definitley don't have it.
I wanted to hear some of your stories and how long it took before the doctors finally got the right diagnosis for you. I have all the symptoms and they are continually getting worse especially when summer comes.
I am going to see an MS specialist next week so I hope that he can help me but wanted to get your advice as well.
I feel we know our bodies best and doctors are human and sometimes make mistakes.
It only took me 2 weeks. I woke up with a numb/tingling hand. Lived with it for 2 days and then started having a migrane. I went to my doctor who was sure it was a pinched nerve- and sent me for a CT scan. The radiologist called in a Neuro, who asked to see me in his office the next day.
The following day I went to see that Neuro, and I was scheduled for a MRI of the head/spine. IT showed so many lesions, they were positive it was MS, but still, they sent me to a MS Specialist. He reviewed the films, did a history, did a really intense Neurological Eval, added a EMG and EEG and VEF- then did a lumbar puncture. THe LP showed nothing, I do not have OBands, however I was given a positive MS dx based on symtoms, the over 50 lesions I showed and my evaluation.
I started Copoxone in a week, almost died from an allergic reaction- started Rebif 6 weeks later, and that was almost 4 years ago.
For some of us, it goes very quickly. If you are having that much problem being dx, then you MIGHT be seeing the wrong doctor. Can you go to an MS Specialist?? They both rule out and dx the disease..
Once I took notice, I saw the neurologist who had me come in to the hospital for 3 days. At the end of the three days, he told me I had MS. The LP was clear, but they were interested in the results of new machine (MRI 1982). My neurologist told me that he knew from my first visit that I had MS. Had I noticed my foot drop in 1977, I might have had a longer search.
I met a lady who had MS for 30 years before diagnosis. She had only noticed problems in the last 10 years.
Limbo land can be very long or very short. i hope your journey through Limbo Land is short!
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Thanks so much! It helps to know that your LP didn't come up positive either. I am seeing a MS specialist this week. I have a brain tumor but the nuero that I see for that says my symptoms aren't from the tumor. I have the tingling in my hands and feet, they just go numb for no reason. I have lost feeling in my legs not totally but it feels strange to me. I have all the symptoms. The lesions on the brain they said could be from migraines. However, this was the first scan they showed on. Meanwhile the symptoms are getting worse and worse. Eye twitching, memory loss, and the summers are killing me, worse with every year. It feels like summer heat is my kryptonite.
I hope there are some answers. I just want some answers.
10 months after my son was born, my left leg became very heavy, I had numbness in the same leg and cold patches on the right leg. I went to see my PCM and was told it was probably a pinched nerve and went for a MRI...negative. 2 weeks later the numbness progressed up my left side to my bra. I went back and he referred me to a neurologist who sent me for a MRI of the brain and spine. The MRI showed lesions on the brain. The radiologist suspected MS and wrote that in his report. Even with this report and my symptoms, the neuro I went to see didn't believe I had MS. I had already conducted my own research and knew that a lumbar puncture was apart of the diagnostic process so I asked about it and he told me he didn't feel it was necessary because I didn't have MS. I insisted on the procedure and he reluctantly agreed. When I went in for the results, he said to me that I showed the o-bands in my spinal fluid and that, basically, there was nothing else it could be but MS. If it weren't for the fact that I had just been told I had a debilitating disease, I would have jumped up and yelled "HA, I TOLD YOU!" Somehow, this didn't seem like an I told you so moment.
Anyway, the diagnosis came approximately 6 months after my initial symptoms. I do know I was lucky in how quickly the dx came but I also learned that you have to fight for yourself because even know it all doctors don't know it all.
Well I went to see the specialist yesterday - thanks by the way for all your responses. He said he doesn't think it was MS because the symptoms I have are the symptoms but because you have them doesn't mean you have it. I haven't presented in the usual order. So he didn't order any tests or anything. Plus because I also have a brain tumor he said that is very unusal most people with MS would not get a brain tumor???? Any suggestions or should I give up on the MS thing all together? I don't know what I would do without this message board. Hugs and happy 4th to all of you!
Tina, just wanted to say hi and ask you a quick question. Your not confusing the words tumor and lesion, are you? Brain tumors have NOTHING to do with MS, while brain lesions are usually apparent in MS patients, but not always.
Lesions, are scar tissue which shows up after an attack on the myelin sheath of the nerves- thats what MS is...a autoimmune disease, where the nerves attack themselves in the central nervous system- the eyes, brain and spine.
Im terribly sorry if you do have a brain tumor- thats not fair for anyone to have to deal with, but assuming you saw a MS specialist, if he doesnt think its MS, then its probably not. NOT ordering tests makes me wonder though...maybe a second opinion is in order? Whenver they start MS testing, they start with a MRI of the brain/ spine and go from there...
Wishing you a happy fourth as well.
I don't have any idea why he would think that having a tumor could rule out MS... Sounds like he's assuming your symtoms are related to the tumor, but if you are presenting lesions along with the tumor that sounds suspicious to me. What are the plans for treatment of your tumor? are they going to do surgery, chemo, or just leave it? I ask because perhaps you won't find an answer until the tumor is treated successfully and you still present with symptoms. I find that many times the doctors can't seem to find the forest through the trees... and it may be that they are concentrating so hard on the tumor that they are having trouble visualizing everything around it. I wish you the best of luck though, I know how frustrating it can be waiting for a dx... I had symtoms for about 10 years that they couldn't explain, then I had two boughts of optic neuritis back to back and that's when they told me you have MS... but they held off writing it in my chart that I was positively dx'd because they thought it would affect my insurance... but after I had my 2nd son at 26 they decided they had to finally write it in my chart and make it official so I could get on the meds... at that time all they had were the ABC drugs so I was started on Beta Seron. That quit working for me so I switched to copaxone and that seems to be a much better fit for me. I have trouble remembering my shots if they aren't given daily.